The Riley's Road to Italy

Menu

Skip to content
  • Home
  • Blog
  • About the Rileys
  • Contact

Blog

What a Miracle Looks Like

What a Miracle Looks Like

I recently took these photos of Keira when she was playing on Livvy’s Make-a-Wish swing set, and I can’t stop thinking about them. I’m sure to a “normal” parent, this would look like everyday life. But to me, seeing Keira’s face in both pictures…it just exudes hope, joy, happiness, and gratefulness. Her standing there, so…

by rileysroad May 5, 2023May 5, 2023
Why Holidays are Exhausting (Now)

Why Holidays are Exhausting (Now)

I’m finally coming up for air from Easter weekend. And I’m still exhausted…mentally. As with most holidays since receiving Livvy’s terminal diagnosis that stripped her of her abilities to walk, talk, and enjoy so many things in life, I dread them. Holidays are no longer what they used to be. They’re all now a glaring…

by rileysroad April 11, 2023April 12, 2023
3 Years of Keira

3 Years of Keira

Wow. It has been a minute (or more like 6 months or so) since I’ve actually posted an update here. Life, travel, advocacy, parenting, work, holidays and everything in between has taken up our time and if there’s one thing I know: time with our girls over anything else is time not wasted. Now that…

by rileysroad February 27, 2023February 27, 2023
Advocacy in Atlanta and London

Advocacy in Atlanta and London

This month has been a whirlwind of travel – first to Atlanta to speak about Right to Try 2.0 at the State Policy Network’s 30th Annual Conference and then to London to speak about the gene therapy Keira received, how it has transformed her life and how we are helping other families like ours. Next?…

by rileysroad September 29, 2022September 29, 2022
PFDD for MLD on Oct 21st

PFDD for MLD on Oct 21st

These letters may not mean much to you but they mean SO much to the MLD community of patients and their loved ones. Because on October 21st, a select group of individuals in that community (including yours truly), get to share their stories in a PFDD, meaning Patient Focused Drug-Development meeting, with the FDA, researchers,…

by rileysroad September 6, 2022November 8, 2022
Right to Try 2.0 Passes in Arizona

Right to Try 2.0 Passes in Arizona

After testifying at the Arizona Senate and House of Representatives, sharing our family’s story and how the expansion of the original Right to Try Bill could help families like ours, I’m thrilled to share that Right to Try 2.0 has passed and was signed by Governor Doug Ducey! Right to Try 2.0 is a first-in-the-nation…

by rileysroad August 17, 2022August 17, 2022

Armer Foundation Gala

In 2020, when we knew we had A LOT of money to fundraise to save Keira’s life, Dave’s Aunt Malinda suggested her friend Jennifer’s non-profit as a supplement to fundraising on GoFundMe. I had never heard of The Armer Foundation for Kids before and was a little skeptical at first but after some research and…

by rileysroad August 8, 2022
Mother’s Day Rings Different After D-Day

Mother’s Day Rings Different After D-Day

It was a few days before Mother’s Day this year that Dave had to remind me that it was coming up the next Sunday. And immediately I got that same feeling of dread and guilt that I felt on my first Mother’s Day after receiving Livvy’s diagnosis (coined D-Day). I was sick to my stomach.…

by rileysroad July 15, 2022July 15, 2022
2022 Cupcake Gala

2022 Cupcake Gala

It’s been so busy this past month that I haven’t had a chance to update the blog regularly but I can’t not mention our trip to Philadelphia, Pennsylvania last month to attend The Calliope Joy Foundation’s annual Cupcake Gala. One of the special guests in attendance? Our very own Keira. The Calliope Joy Foundation was…

by rileysroad June 15, 2022June 15, 2022
One-on-One Time for Eva

One-on-One Time for Eva

I would be remiss not to mention how much of a priority it has been for us over these past two years to ensure Eva (our oldest, who is 6), has one-on-one time with Dave and I or time together with just us and not her sisters. Livvy and Keira’s medical journeys have been the…

by rileysroad May 4, 2022

Loading…

Something went wrong. Please refresh the page and/or try again.


Follow My Blog

Get new content delivered directly to your inbox.

Like this:

Like Loading...
Blog at WordPress.com.
  • Follow Following
    • The Riley's Road to Italy
    • Join 130 other followers
    • Already have a WordPress.com account? Log in now.
    • The Riley's Road to Italy
    • Customize
    • Follow Following
    • Sign up
    • Log in
    • Copy shortlink
    • Report this content
    • View post in Reader
    • Manage subscriptions
    • Collapse this bar
%d bloggers like this: